Thursday, May 16, 2013

I got an email I found on a group for parenting foster and adopted children about some upcoming Webinars that look very interesting and presented by those who walk the walk.

I am posting them as they look amazing. I know of the parent who is doing the Parenting Children who have been prenatally exposed. She is phenomenal and it will be worth the $20. I will be attending and getting some training hours as they provide a certificate for attending.

NACAC has scheduled a series of webinars on a variety of topics. Each
session below is taught by experienced individuals who are all
adoption professionals and adoptive parents. Each is an acclaimed
speaker who has received rave reviews at the NACAC conference and
other speaking venues around the U.S. and Canada.

If you cannot attend the session in person, you can still register and
receive a recorded version of the session after it's over.
Certificates of attendance will be available for those who need proof of
training hours.

With all the talk of Disney and Disabilities it reminded me that I need to get moving and planning for our adventure to California next Wednesday. I had procrastinated long enough that I needed to get myself moving and planning.

We have traveled with Becca and I have that down to a science and she is a seasoned traveler. But we have traveled with McKellan before he was an immobile baby and he was because of his delays easy to manage. But with him now being a mobile, very independent 3 year old who is very much two this time will be another story.

I asked for help from his Occupational therapist and today his Speech teacher came back with ideas from the team. There thoughts just confirmed what I was thinking about, but what we realized is that he needs boundaries to stay put. If he has them he can do well.

I forgot that I was going to order an Airplane Toddler Harness that I saw in my parents magazine. Oops!! I told the teacher that I needed it pronto and hoped that Amazon had it so I can get it here FAST!

Mackie is into airplanes after visiting Grandpa at the airplane hanger. He was so excited when we picked Ian up at the airport recently. I decided that he needs some airplane books to go through the process and also to entertain him on the trip.

I need to remember his crayon roll-up to use with his airplane color book. I made this Crayon-Roll Up for Mackie and have posted the instructions for making your own on my Thirteen and Frugal blog.

Stroller and car seat will be flying with. We have to bring HIS car seat. When he goes into unfamiliar settings he will not drink his bottle until he gets accustomed to it. When all else fails, when we are out, we head to the car and give him his bottle.

When things are too much, he settles down when we put him in HIS Red Maclaren stroller with his blanket. Next on the packing list:
His noise blocking headphones, his blanket, snacks, drink bottle, chewy
tools, IPAD with loaded movies is going to be our lifesaver.

I need all
of his sensory tools, like his Benik Brace which provides feedback so
he can handle outside the house activities and he doesn't flap and
squawk nearly as much. We will put it on right when we get to the airport and for the plane.

Mackie pats on his chest when he gets disregulated and will get excited at the sight of his Benik. It works like magic for him to get regulated and get strong feedback.

Today his Speech Therapist expanded our "How Does Your Engine Run" toddler programming with the addition of Speech Communication and today we introduced it on the Ipad. I am so excited that the Alexicon AAC has a page of Sensory Tools and he can identify and ask for what he needs hopefully ending much frustration.

I will be loading it on Ipod Touch that we have bought just for his Communication. He is too proficient and knows how to navigate his Ipad too well to use the same device for both. I am excited to use it to help him not squeal for what he wants on this trip which will save the other travelers ear drums and my nerves.

Enough planning for today. Everything is ordered. I have made my list.

What are the statistics? In 2011, the employment rate for individuals with disabilities was 32.6 percent. Enough said. Actually that was far better than I see from my walk in the special needs world.

But moving on. We are headed for Disneyland next week. I am now going to be heading to the theme park not only with seasoned park veteran Becca, but the first time taking McKellan to the noisy, crowded, overstimulating Disneyland. Why would I do it? Because it is the thing to do for Miss Becca and a chance for Little Guy to see "his" Jake, Mickey and Car-Car. When we told Mackie we were going to Disney he ran around the house squealing "Jake", "Car-Car", "Ouse" for ten minutes solid before he fell down from moving so fast running in circles. It's normalcy, it is a chance to go to the places of Magic from the characters that have comforted her and him through their tough day to day existences.

We are also headed for the theme parks in Florida when we head out to attend the Noonan Syndrome and Brave Kids Conference on July 31 to August 4. The article got me thinking ahead on planning ahead and also the "perks" or not so perks of doing Disney, Universal, Sea World with my kids.

I had procrastinated on this one, but life day to day is so full of Doctors appointments, therapies and cares and feeding regimes that I must give myself some slack. Or just maybe, I didn't want to think about what it was going to take until I had to.

First planning ahead is paramount. I need to make a list.

I called Doctor Sheirlie's office to get letters of disabilities for both Becca and McKellan to take to get the Prized "Disability Fast Pass". No I don't need to go rent a wheelchair for Miss Becca to cheat the system. Becca has hers. McKellan still is in his stroller, but he fatigues and with his sensory overload with the shade down, hopefully will give him a reprieve from too much. I better not forget his blanket and have him wear his Benik brace for sensory input along with his sunglasses and hat to protect his damaged optic nerves. I won't even go for the challenge to keep them on a tiny 3 year old little one with Fetal Alcohol Syndrome, Autism, and a genetic syndrome.

For our sanity and theirs, we need to cut lines or more appropriately ACCOMMODATION. The disability passes are there for a reason and they are not easy to get. It requires a doctors letter. Despite popular opinion we will still be standing in many lines as they have gotten rid of the line jumping in many places. Which for Becca and my kids can be twice as challenging than for others. My kids both do not do well waiting. But others will say no kid does. But my kids have challenges. They both have hypotonia. Standing in one place causes Becca's legs and feet to swell from lymphedema which is incredibly painful. Her lungs only function at 48% of normal due to her Noonan syndrome and muscles with low tone. Her strength is that of a tiny child. Her heart impaired. Too much anything triggers the always present headaches into full fledged Migraines that will put her into the emergency room. Mr. McKellan with his autism will flap and squawk when overstimmed and tired. I will be not enjoying myself trying to make sure the needs of my children are met and managed to not spoil our trip to the Magic Parks.

We have flown with both before, and Becca's chair. It may have a small perk. The article talked about "A trend, also seen at airports where “travelers request
the use of complimentary wheelchairs... as a technique of getting pushed
to the front of security lines, only to leap up and sprint to their
gates once they have clearance.”

But has anyone tried to go through the TSA with an young autistic person with a tiny service dog and they targeted and pulled her aside even with all the prompting about her disability? They wouldn't let me be with her, hold her hand and took her tiny dog away, even though they had been handed the letter from the Doctor, had all the dogs travel papers in advance? She was standing their shaking and I was almost sure that "This Mom's" scene would have possibly been labeled as not quite socially acceptable as I had to lightly raise my voice. "My daughter has Noonan Syndrome, she is autistic and she is scared". Can't I stand NEAR her to help her through your processes. She can't get off her braces by herself, you are asking her to do things she can't by herself, her hands do not work, she has Post Traumatic Stress Disorder and Austism and does not like to be touched. Do not put your hands by the insides of her legs you are triggering her abuse history".

Fortunately a Woman Supervisor overheard the stupidity the two TSA workers and took over the situation.
I was handed Becca's dog and I stood next to her while she used the wand to scan Becca. No need to take off her braces. With an apology that she was randomly pulled aside by being lucky enough to just be the next one pulled we were off to the gate.

We may have gotten to security ahead of the line, but I am sure by the time we went through 30 minutes of Miss Becca being targeted for being a threat to National Security, we were actually behind them reaching the gate and I got to pick up the pieces of a Traumatized, Scared, Anxious and still tearing up Becca.

Arriving at the gate, they had heard about the fiasco of the girl in the little pink wheelchair and her teeny tiiny service dog and the airline had upgraded her seat to First Class and Morgan had her own first class seat of her own. The tears turned into smiles. There are still good people in the world who get it.

But speaking of getting on the plane ahead of everyone, but getting off is another story. Ask anyone in a wheelchair. For Becca she has her own chair, she can transfer on herself. But we wait until everyone to get off and then wait for her chair to come up from under the plane. If we don't fly with her chair, we have to wait for the airport transfer crew to get her chair to the gate. Half the time, it is not there when we unboard. Several times, despite having it ordered, it does not arrive until we have to call for it. With the tight times of transfers, we have even had to carry Becca through the airport or miss our connecting flight. Which we have done because of no chair met us.

Special needs kids and special diets, I need to bring our own. We need to bring noise blocking headphones and as always they will tell Becca to take them off while the plane takes off and lands. She is now trained to "SHOW" them the fact it is not plugged in while I explain that she has "autism and hyperacusis" she hears everything really loud. She can't talk to anyone when she is anxious due to her expressive language disorder.

Traveling with my kids, no such thing as Medical Confidentiality that the regular world enjoys. I have to just keep thinking that I am raising awareness, educating and advocating for those with special needs.

Are you thinking that my kids are lucky yet?

If with all they deal with, they deserve to have something positive. A good parking place, a cut in line, or being first for once and being "Special".

To Be Continued
PART II Traveling with the Tiny Titan

I will continue to blog this week about traveling with the Tiny Titan and her little brother and our adventures of being "lucky" to have a wheelchair or disabled guest pass.

From a quote from the article, *This might lead to growing acceptance of people with disabilities, because, kids, look how lucky people in wheelchairs are!

Tuesday, May 7, 2013

For those of us with young adults with FASD and other Neurocognitive Challenges the biggest thing is that people do not understand their hidden brain differences.

My friend's daughter who has Noonan Syndrome is just graduating and we have deep conversations
of the transition to adulthood will mean for her and the expectations of
society. Talking with a friend last week, she told me that a long time co-worker remarked when meeting her daughter "She seems normal" and my friend added "She can't do normal". As we talked the it was the perfect example of what is so frustrating for us as parents, that people cannot see our children's challenges and executive function deficits.

It is the challenge that haunts our efforts to try to find them any sort of help. No one understands that no matter how much we try to teach, our kids seldom can manage to do things on their own despite IQ's in the normal range. They just need to try harder. We just baby them, we just this or we just that. We are blamed for our kids brain differences and that we didn't teach them to be independent. We are faulted because we cannot heal our children's prefrontal cortexes.

Do you think our kids like having us try over and over and over again teaching them and badgering them to do something that for so many comes simply? For mine and most of my friends children/young adults they are people pleasers.
They want to please. They would do it if they could. They don't want to be seen as slow or "stupid" as Dee often used to call herself. Our kids are blamed because they can't do it independently and they feel different enough already.

Over the years myself and the other parents I know often talk about the frustrations of our kids not getting it, and doing it for themselves. We have tried over and over and over again to find a way for them "to get it". We have tried every chart, reward system, and any other strategy offered by well meaning providers and ones that our parenting guides say we should use to help our kids become more independent. But to little avail. The only one who learned anything was Mom who learned that they do not work.

Often we find ourselves lecturing, badgering our kids out of frustration forgetting ourselves that we are expecting them to do things they can't. Sometimes I wonder who has the brain injury, me or them? We have to be the prompt to remember the promptand thus adding more work and frustration to our list of daily duties. We have to prompt our kids to success and if we forget or are tired or back down, we find that they just don't do it no matter how many times we rehearsed the task.

For Detamara and some of my others, they live their lives one moment at a time. They do not plan ahead very often. If they have a mission they can do it, but to do the Activities of Daily Living they struggle. So that in itself causes even more misunderstanding. It they can do it sometimes, they should be able to do it all the time. It is their choosing to not do it leading to the often diagnosis of Oppositional Defiant Disorder or some other label. It is so misleading that these kids can be so compliant sometimes and not others.

They are propped up the the daily structure of the school calender and their families routine and structure. As they age and they are EXPECTED to do it for themselves they begin to flounder. Take away the structure and they can't do normal.

We have provided what they needed to function and as they reach that magic moment of 18 when society expects them to be able to run their own lives. As that magic age comes closer the parents begin to panic. The kids have been taught the concrete rules of adulthood and think they can do them. They do not understand that their concrete thinking and their executive function deficits impact daily life and their futures.

How to we protect them and help them make progress? Interdependence. Because without it they can't live independently and they need us to help continue to be their EXTERNAL brains, prompting them into their young adult lives.

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The Tiny Titan

Our Miracle

Tiny Titan, Journey of Hope by Ann Yurcek

Mom's Choice Award Winning Non-Fiction

Our Story

In 1989 our youngest daughter Becca was born with a rare genetic disorder, (Noonan Syndrome) and while she struggled to survive, our family tumbled into poverty. With Six children we had to live below the poverty line to qualify for help to cover her million dollars in medical bills.

Becca never gave up and neither did we.

When my husband lost his job due to Becca's insurance issues, he returned to school. It is never too late to change careers. Two years of undergraduate coursework and four years of medical school were supported by delivering thousands newspapers and thrifty living...and prayer.

In the spirit of giving back we went on to adopt five siblings separated in foster care. Leaving our home of twenty years, two families who both knew adversity moved onto the Hope of a new life 600 miles away to begin the Journey through Residency and becoming a New Family. Along the way we soon discovered that our newest children would be diagnosed with Fetal Alcohol Spectrum Disorders and challenges from their histories of abuse and neglect. My strength would be tested, my advocacy skills honed to help my children with special needs. All the while bargain hunting and struggling to feed our family of thirteen on residency pay and prayer.

Our Tiny Titan showed us the gift of today and to never, ever give up. Our family CHOSE to not become a statistic of families facing catastrophic illness. We learned to live frugally, stretch a dollar, and find happiness with being together. I learned to navigate the complex world of advocating and finding help for my children with special needs. Instead of feeling hopeless, we found strength in turning the negatives into the positives.

My children are now all nearly grown, our family no longer financially struggles. My job is never dull, the kids keep me busy, there is always a battle or some barrier to cross to help my children. My husband is now a surgeon, my children make me proud as they live their lives. I have a new gift the enjoyment of being a grandmother.

With my book now published, the kids grown, I have a new opportunity... To write again... and share in the special needs world and take care of our newest addition to the family, McKellan Edward Yurcek was offically adopted April 16, 2013.